Survivors who have used only alternative treatments
Comments
-
The burden of proof lies in the those claiming an agent is effective. The burden of proof for overall survival has not been met. Saying, well maybe it could work, is not in the scientific standard. They keep studying to see if they go out long enough Herceptin will pay off. This is almost never the case with such cardiotoxic therapies. Cardioticity bioaccumulates. And then there is the fact that the patient's heart ages.
Good luck with finding more info. I always want to learn.
0 -
It can be somewhat confusing unless you keep up with all the large studies. But since I am obsessive about Her2+ BC, I do keep up with all the large Herceptin studies. It is very annoying, and a disservice to BCO members, when BCO does not put study results in context.
0 -
Orange1,
I will do further reading at your suggestion. Give me a few days. I understand the importance of context and realizing you have to know the relationship of every stinking study to one another in order to fully grasp the facts.
I appreciate your obsession. I find it hard to talk to somebody who is not as obsessive as I am so you are a breath of fresh air.
0 -
Thanks Mollyann. I appreciate yours too, especially in your quest to warn others about overtreatment.
BTW, I agree with you regarding private practice oncologists making a fortune off of selling chemo, and that this must cloud their judgement sometimes.
0 -
This study is proof to me.
http://jco.ascopubs.org/content/28/28/e541
Herceptin sure seems to do it's job for patients with my diagnosis.
Patzee - do you have any results of studies into alternative only treatment that show such outstanding results?
Sue
0 -
I just don't think most things in life are clear cut. I've always preferred the term complimentary rather than alternative. I took my chemo and religously take my tamoxifen and any meds that help me with their side effects, but, have found some complimentary treatment most helpful. I love my accupuncturist (Chinese trained) and DH says he can see the difference in me after a yoga session. Find some of the articles on melatonin intriguing. I know many physicians and patients who swear by peppermint for IBS. I'm a very cranky girl on the days I can't exercise and I feel absolutely terrible when I'm not eating right. Have to admit to only being good about drinking green tea when its iced. I like the trend in medicine to individualizing treatment. Studies used to only look at comparing chemo drugs, now, they're looking at the benefit of individualizing treatment. Too late to help me, but, surely hope the test to find out who will get neuropathy from a taxane pans out. I read the studies looking at TC vs AC or AC-T, thought my Onc was making a rational decision. It just wasn't a good decision for my particular case--we both agree on that.
What I'm getting at is I think keeping an open mind and seeing the risks and benefits and grey is always a good thing. Which is why I found this article so good, I thought it tried to be analytical and balanced.
http://www.theatlantic.com/magazine/archive/2011/07/the-triumph-of-new-age-medicine/8554/
Sorry you'll have to cut and paste, I didn't get it to link
0 -
@Luan sez, Melissa ! Where have you been hiding ? Please share or pm me on what you have been doing, am most interested in what you have to say
Thank you, Luan! I've been here for a few years, but lurking. I am a Stage IV survivor and many in their first go-round don't want to get too close to me ... it could be them tomorrow. I understand that ... it used to be me. But when all the talk about cannabis and hemp oil came up, I had to jump in and that got me started. LOL Like a breaking dam!
What can I tell you? Seems like you're heading in the right direction all by yourself, at least spiritually. Don't ever lose track of your light, girl!
The thing is, most people want guarantees with alternative tx ... but they don't expect the same guarantees with conventional. Like it's OK if the chemo doesn't work; we'll try a different one. But if an alternative protocol fails them, they blame the protocol harshly. Each of our bodies is totally different ... each of our cancers is totally different (even though all breast), and IMO each of our cancers came about by different reasons whether emotional, chemical, bad diet, etc. Or even some studies have suggested breast trauma can exacerbate ... dang, what are mammograms? Breast trauma combined with radiation! LOL
But hey, ask away and I'll help however I can!
xxoo
Melissa
0 -
I'm just glad we are back on topic.
0 -
Hi sis Melissa
Thank you for responding, you sound so upbeat, I hope it's contagious ! LoLLooks like I'm not doing too well and they're testing, so will see what the results are. Right now, hanging by the nails, ouch
If the chemo did not work, it's gonna be a whole new ballgame for me. Will definitely not trust the onco nor the meds. Am going for MRI of breast end of July.
Will start taking notes of questions you have so kindly offered to answer for me.
Love ya
Edited to add: did not read the thread on hemp oil, but yesterday asked a nurse who asked the pharmacist about Dronabinol which I thought was hemp oil...apparently they are not the same, will have to call the pharmacist and speak with her directly after I research this further. The nurse came back saying that they would not prescribe anything with Omega 3 while I'm on Tamox. Flax seed is a no no.
Despite much research, I was not aware of above interaction as I take sometimes up to 2,000 mg of fish oil. I gather from her comments that hemp oil is also Omega 3.....boy, it gets sooo complicated !
0 -
Luan, I just read what's going on with you. I'm keeping good thoughts it's no mets. Is it next week you are going for the scan? I hate this dang disease.
0 -
Sometimes it just doesn't seem to matter what we do, does it? Thinking of you Luan
0 -
Just dropped by in this complex thread and thought I would add a few comments. The finessing of combination treatment for many different combinations between antibody based therapy with chemo is still ongoing; and the interpretation of clinical trials complex. Added to that the option of cross over; further complicates the interpretation of the data (which is why the discussionsection in te full published peerr reviewed publication should be read). Not surprisingly Her2 blocakde on its own does not work, but it does in synery with chemo (although I guess which one is still being developed?). I have followed the literature of Paclitaxel ( plus Bevacizumab (anti-VEGF) versus Paclitaxel Alone for Metastatic Breast Cancer because I am TNBC. In a large trial published by Miller in N. Engl. J. Med. 357, 2666-2676 (2007)] an improvement in progression free survival from 5.9 to 11.8 months (median) was observed, but also like the herceptin combo trial discussed above, there was no increase in disease fre survival was observed. In the disussion of these data in this paper, many reasons (non-exclusive) were put forward including resistance to the VEGF antibody, but also how they could not interpret all the data because of the metastatic nature of the disease and 'Data on treatment administered after progression were not collected in this trial, precluding an exploratory analysis of the influence of subsequent therapy on overall survival'
My understanding is that targetted therapy with monoclonal antibodies in BC does work; but the setting is criticial including the type of combination chemo. Further when and how frequently administered is also important. These things are moving forward, but becasue they have to be based on trials in large numbers of patients takes time. The resons for drugs working in combination are complex, and often unexpected synergies (not understood) emerge. Once trials are done at multi trial centres, differences in effect can also emerge for obvious reasons which they try to control. I think it churlish to suggest that Her2 antibody does not work, it sure does in the right setting and in combination with the correct chemo. But is is not a cure, nor is it with out side effects. The degree to which we understand progression free disease survival versus overal survival rates will be key. Finally as I have acess to pdfs of the orginal articles; I am happy to share the pdf (assuming that is allowed and you can do so; but how? to this thread); the real detail of these studies are not in the abstract, but the detail of the results and the discussion
Josephine
0 -
Hi Kira and Pip, love you sisters
I'm waiting for THE call. I gather they will call soon as they will scan me before I'm scheduled to see the onco in three weeks. Crossing fingers that I don't get a phone call from him, but that I will see him only at visit, which will mean that the results are good, right? Or am I just wishful hoping....
Kira, good luck with your mammo and don't forget to take a pain pill. Dense breasts are so tender, can't even stand manual exam. I cringe, grimace and the docs all feel bad.....
0 -
I would assume that they would call if they suspect anything from the scan. So, yes. No call would be a good thing.
0 -
Oh I remember how much it hurt in January. I had seen the BS in December, and for the first time in the 5 months he had been trying to get the opening to stay closed I was told(I think the scar tissue is going to hold). I was so afraid it was going to break open when I was smushed in that dang machine.
0 -
Luan, why? Why is fish oil and flax a no-no? My gosh, we need our omega 3s. Cancer likes omega 6s too much.
Xxoo
Melissa0 -
kym-
I've used zumba before, during and after my surgery. Its fun and entergetic and you just tailor it to you needs. Like a week after surery I just wore 2 support tops and didn't lift my left arm as much. you'll love it
0 -
Melissa, dun't know
I have to call the pharmacist to ask her why, maybe tomorrow, if I can remember.... 0 -
Kate, that was a brilliant article you posted. Well balanced and to the point. I'll repeat it here since you were unable to link it.
The Triumph of New-Age Medicine The Atlantic, July/August 2011 By DAVID H. FREEDMAN
http://www.theatlantic.com/magazine/archive/2011/07/the-triumph-of-new-age-medicine/8554/
Here's a teaser...
"Mainstream medicine uses the placebo effect all the time," says Ted Kaptchuk, a Harvard researcher who studies the impact of placebos. "Doctors don't tell you the drug they're giving you is barely better than a placebo. They all spin." To be approved by the FDA, a drug has to do better than a placebo in studies-but most approved drugs do only a little better, and for many drugs the evidence is mixed. A number of studies have indicated, for example, that most antidepressants don't do better than placebos, but patients filled more than 250 million prescriptions for them in 2010. The vast majority of drugs don't work in as many as 70 percent of patients, according to an estimate from within the pharmaceutical industry. One recent study concluded that 85 percent of new prescription drugs hitting the market are of little or no benefit to patients.
0 -
Luan, I'm so sorry you're going through this tough time with your health and with scary tests. I'm sending positive vibes and hope it turns out to be something simple with an easy solution.
Calm, peace, love, healing....
0 -
Hi Joy, thank you very much for your kind words. I guess I'm feeling very lucky, they'll have to bump someone, coz three weeks is an extremely short turnaround for our public system which is 1000% overwhelmed and in a dead-lock. Millions in my prov. don't have a family physician, as they are overloaded and don't take any more patients. I don't know if this scan is a nuclear one. Last year, had to go for one, can't remember what it was for and at the same time there was this crisis in Cnda where there were no isotopes available and they had just received a tiny tiny bit from Europe or somewhere and were doing only the extremely necessary ones. Ouf !!
We often hear heart patients dying because they did not have access to the necessary care (testing and surgery) scary.....
0 -
If you ask for a cancellation date you could get in within a couple of days.
0 -
You know what Pip, I'm not looking forward to any of this, so will go with the flow ..... 0
-
Member, you wrote:
In any event, the benefit of herceptin has been shown over and over again, its really silly to debate it. Its one of the few real wonder drugs and women had to fight for it.
Of course, we have agreed to disagree. And we are going to continue to disagree on this and other treatment benefits.
I am a member of the National Breast Cancer Coalition Conference. We are the people that walked (and walked and walked) for continued funding for Dr. Dennis Slamon to develop Herceptin, through the Department of Defense (DOD) peer reviewed Breast Cancer Research Program (BCRP).
Though my fellow NBCC members walked for funding for Herceptin before I became of member, I am proud of this and our other achievements as a group.
Hercepting works? The proud NBCC member in me would like to say: YES. We did it. It works.
However, this answer depends on which statistics one is looking at. Absolute or relative, that is the question.
Our president, Fran Visco, said it best in her now famous article "We fought cancer and cancer won". (Though she is not specifically referring to "our" Herceptin, but to the evolution of cancer treatment in general).
http://www.newsweek.com/2008/09/05/we-fought-cancer-and-cancer-won.html
Unfortunately, the gains, though real, are small (in absolute terms). And the side-effects are dreadful.
0 -
I think we all want for there to be a great drug or cure - even if it is only for a certain subset of tumors. I wonder how many breakthroughs have been hailed in the past. This is probably impossible to verify, but as a general rule, surgery continues to be by far the most effective single treatment for non-metastatic breast cancer.
People complain that surgery is "invasive." I shake my head askance when I hear that term. I never understand such territoriality in the face of cancer. Doctors are welcome to step on inside and found a colony in me. They can name a viceroy if they like, and station troops. I don't care. As long as the cancer leaves. I'd rather be liberated by the Allied forces than invaded by the Nazis.
0 -
The tumor is a symptom of the disease. I just wish they would look for ways to combat the disease and not the symptom. I guess that's where my problem lies. If surgery or herceptin can get rid my body of the tumor than that's a great first step but conventional medicine has nothing to offer beyond that.0
-
"I'd rather be liberated by the Allied troups than invaded by the Nazis." Brilliant.
0 -
bravo Athena....you are preaching to the choir here....
0 -
Impositive: I can only speak as a hopeful early stager. It is my personal view that ASSUMING that a person with early stage BC has a lag time of at least two or three years between the first occurrence and the time when mets would appear were no further action other than treatment taken, AND if you have bad enough habits, you can make lifestyle changes to change the environment of you body and hopefully make it inhospitable to cancer. They must be radical, though. Not even significant. Radical. And you need time.
This theory only works if you had bad habits. I used to smoke, and I had less predictable sleeping schedules than some cats. I also did not exercise regularly. I never went in the sun. I now: sleep 8 hours per night, although this night is one exception, I have not smoked in more than 2 years, I take 10,000 IUs of Vitamin D3 per day and I exercise both regularly and strenuously. I am hoping that this combination of changes is sufficiently radical to change my body's environment and make it less hospitable to any lingering cancer cells.
If you had a healthy lifestyle before dx....there is the conundrum. At that point, you examine your physical environment. Or rail against genes...
So over the long term I believe we have to act with the thinking that you describe: that a cancer tumor is a symptom of something wrong. That is, assuming that we can make the changes and were not Stage IV at initial dx.
0 -
Susan-
Thanks for posting this great article!!
This is exactly how I feel and what I have told my friends. My friends look at me like I'm nuts when I say this stuff. They think I'm just bitter. I think this article is enlightening! I will share it with my daughters.
0
